I had tailbone pain and swelling in the area that started suddenly four months ago, which has improved with antibiotic treatment. It started when I began taking something called "transfer factor" (oral) which is supposed to help with Lyme disease - it started within a day of taking the first capsule, stopped when I stopped taking it (I took it for several days), started up again when I restarted, stopped again when I stopped it. The bottle said to expect (nonspecific) problems in the beginning, so I took it again, the pain started again, but this time when I stopped it, the pain didn't go away.
My doctor switched me to an antibiotic that is supposed to help bone infection, and the pain and swelling coincidentally got a lot better but the pain didn't go away completely. An MRI showed a 13 mm cyst/abscess/possible fibrous mass that corresponded to the area of my pain, at the end of the coccyx.
During this time, I have had difficulty with bowel movements - they're normal to start, but then it's like the bowels just stop moving. I also had an episode where I woke up soaked in urine from having released a full bladder in my sleep and no signal to wake me. I am not a deep sleeper. I have had neurological symptoms like Bell's Palsy from late Lyme disease, but nothing like this, and they typically track treatment pretty tightly (improving dramatically with antibiotic treatment, getting worse when it stops), they haven't happened randomly like this while I'm on antibiotics.
I just saw an orthopedic surgeon, and when I asked him what the mass was (the MRI showed extension into the bone and recommended further action), he said "coccydinia". He said I must have injured the area, even though I recall no injury, and I am not a cyclist, horseback rider, etc. He recommended steroid injections. He thought the improvement from the antibiotic was coincidental, and scoffed that I was still taking them. I've read several experiences here when people have had abscesses, and they all say the pain got worse after the injections, not better. But that may not be a representative sample. I'm wondering if anyone knows where I can find information on a representative sample of patients with coccydinia from abscesses.
A member of my family is a doctor and suggested it may be cauda equina syndrome. Another doctor suggested it's a pilonidal cyst, but the location of the pain and abscess are very different (the abscess is at the end of my coccyx, and the pain on touching the area is worse the lower you press). My family member's idea sounds the most like what I'm experiencing, but he's not local, I can't really see him for formal medical care anyway. Another doctor thinks the nodule should be biopsied and the fluid cultured, but he can't do it himself.
Can you recommend anyone in the area around Silicon Valley in California who is good at getting to the bottom (no pun intended) of coccydinia? I had undiagnosed Lyme disease for over ten years, plus two years before proper treatment. The start of this with the transfer factor could be coincidental because of local swelling, but it would help if I could find someone who could take all possibilities into account. The MRI wasn't conclusive about whether it was an abscess, cyst, or fibrous lesion, and the highlighted areas showed extension into the bone. But I'm told there's no way to know from the MRI if it really is in the bone or not. (??) I've also read that cysts in that area are common in people who don't have tailbone pain.